Worldwide policies on haemochromatosis and blood donation: a survey among blood services
ABSTRACT BACKGROUND AND OBJECTIVES: Haemochromatosis (HC) is a disorder of iron metabolism, requiring frequent phlebotomy to normalize high serum iron levels. There is currently no consensus relating to the eligibility of these patients to donate blood for transfusion. To gain a better understanding of the policies worldwide, a survey amongst blood services was performed. MATERIALS AND METHODS: A web-based questionnaire was developed and distributed among 44 blood services in 41 countries to identify the different policies relating to patients with HC and blood donation. RESULTS: Respondents from 35 blood services (80%) of 33 countries completed the questionnaire. In 24 blood services among them (69%), individuals with genetic susceptibility for HC and/or patients with HC are accepted as blood donors. In approximately one-third of these blood centres (33%), genetic carriers/patients are allowed to donate blood more frequently than regular donors. Prescription from/approval by the patient's treating physician and/or a donor physician is required in the majority of the blood services (87%). Similar policies were identified in a few countries; however, in general, the policies regarding blood donation from patients with HC remain widely variable. CONCLUSION: The results of our survey demonstrate large differences in the blood donation policies regarding carriers/patients with HC illustrating the need for uniform evidence-based and cost-effective policies which could benefit both HC patients and the blood supply around the world.
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ABSTRACT: We describe the recognition and pattern of care of voluntary blood donors with early-uncomplicated genetic haemochromatosis in our blood donation centre. Asymptomatic volunteers with suspicion of hereditary haemochromatosis (HH) due to an elevated ferritin level on routine screening were referred for further investigation. Alternatively, we accepted subjects with prediagnosed HH on referral. In the case of early-uncomplicated genetic haemochromatosis, either standard whole blood donation (WBD) or double-erythrocytapheresis (DEC) was offered. A median of six procedures was needed to achieve a ferritin value below 100 ng/ml in the WBD group and of four in the DEC group (P = 0·5). The rate of donation side-effects was higher in the DEC group, while the costs it generated were equivalent to WBD. Compared with WBD, DEC had no beneficial effect on treatment number, length of treatment, side-effects or treatment budget in early-uncomplicated HH. Integrating donors with uncomplicated genetic haemochromatosis to blood donation programmes can supplement blood stores and provide the donors with a cost-effective and altruistic purpose of treatment.Vox Sanguinis 09/2013; 106(2). DOI:10.1111/vox.12078 · 3.30 Impact Factor
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ABSTRACT: Objective To explore Hereditary Haemochromatosis (HH) patients’ perspectives on genetic information, namely the types of sources used, preferred or trusted. Methods A survey online was conducted by the European Federation of Associations of Patients with Haemochromatosis (EFAPH) and applied to members of 9 national associations. Results From a total of 1019 validated questionnaires, 895 respondents had performed a genetic testing for HH. From these, 627 self-declared that they were sufficiently informed about the implications of the genetic test to their health. The majority (66%) obtained the information from a specialist doctor, but would like to obtain it from the family doctor. However, the specialist was still the one they trusted more (69%). Regarding the 298 respondents who did not feel sufficiently informed, the majority (78%) also would like to have information from the family doctor although they also trusted the specialist more (75%). A different perspective was reported when patients were asked about the implications of the genetic testing to their family members, where the majority of respondents preferred obtaining information from a specialist (69%). Conclusion This study elucidates the patientś needs for information and identifies the General Practitioner (GP) as the preferred source to obtain information about HH. Practice Implications These results may have important implications in future strategies for HH awareness, giving a special emphasis on GPs as the main players.Patient Education and Counseling 07/2014; 96(1). DOI:10.1016/j.pec.2014.04.017 · 2.60 Impact Factor